While congenital heart defects are common, particularly among African Americans, awareness of its causes, treatments, and efforts of prevention, remain relatively low. Congenital Heart Defect Awareness Week, February 7 – 14, offers an opportunity to raise awareness of both the nation’s number-one birth defect – affecting approximately one in every 125 babies every year – as well as bring attention to ongoing medical and scientific breakthroughs designed to decrease the numbers impacted by various heart defects.

Congenital heart defects – those present at birth – are not only preventable, but are further complicated by a lack of routine testing among pregnant women and low rates of newborn screenings. Undetected, conditions that include damage to the heart’s chambers, valves, or blood vessels become life threatening. According to the American Heart Association’s Heart Disease and Stroke Statistics 2012 Update, heart defects continue to be the greatest source of infant deaths related to birth defects.

Racial disparities continue to impact survival rates with infant mortality from congenital heart disease highest among African Americans. And while some heart defects carry a genetic link, others are largely influenced by environmental factors such as maternal smoking during pregnancy, maternal obesity, exposure to certain air pollutants, solvents and pesticides, low levels of maternal folic acid ingestion during pregnancy, and poorly controlled pre-pregnancy and gestational maternal diabetes.

In 2014, the American Heart Association (AHA) released a scientific statement on the diagnosis and treatment of fetal cardiac disease. Written by a team of cardiac and obstetrical experts with lead author, Mary T. Donofrio, MD, Director of the Fetal Heart Program and Medical Director of the Critical Care Delivery Program for the Fetal Medicine Institute at Children’s National Health System, the statement outlined guidelines for diagnosing and treating fetal cardiovascular problems.

“The goal of the fetal cardiologist has now become to understand the fetus as a patient, knowing that the fetal circulation is different from thepostnatal circulation that CHD may progress in utero, and that cardiac function and stability of the cardiovascular system play important roles in fetal wellness,” Donofrio wrote.

Fetal wellness assessments that technologically have been proven reasonable and safe, include kick counts and non-stress testing beginning in the third trimester.

While some congenital heart defects can be found before birth; others are determined after birth with babies showing bluish tinted nails or lips or having trouble breathing. Certain hospitals screen all babies soon after birth using pulse oximetry screening – which tests the amount of oxygen in the blood and pulse rate. However, pulse oximetry screening is not required in most states. Other heart defects might have no signs at birth and are not found until later in life, during childhood or even adulthood.

Sometimes called a hole in the heart, this defect — the most common congenital heart defect — occurs when the muscular wall (septum) separating the bottom chambers of the heart (right and left ventricles) doesn’t fully form. The hole allows oxygen-rich blood to leak from the left ventricle into the right ventricle, instead of moving into the aorta and on to the body. In the right ventricle, the oxygen-rich blood mixes with blood that does not have enough oxygen in it.

As medical care and treatments have advanced, infants with heart defects are living longer and healthier into adulthood. Roughly 1.3 million adults in the United States are living with a congenital heart defect.